I had untreated PA for 20 years leaving me very ill and bedridden most of the time. I was a patient of wonderful Dr Riar, may God protect his dear soul. Under Dr Riar's care from May 2012 with daily high dose injections of methylcobalamin and occasional infusions I began to make a near miraculous recovery. My intractable bowel problem started to heal, pulse, heart rate and blood pressure went in to normal range, I came off all thyroid meds and my brain started to work.
Now worryingly there is a methylcobalamin shortage and I can no longer inject daily or even every two days and my symptoms are returning. I am feeling faint, bowel problem and profound exhaustion is back. I've tried injecting with hydroxo but it does absolutely zero I don't seem to be able to convert it to a useable form.
I managed to get a small amount of extremely expensive injectable methyl from Germany. On PA Soc advice I am trying Better You under the tongue methyl spray to supplement the injections. This way I am trying to ration injections down to once a week which will cost me £5.
So far still feeling ill with pattern emerging of one good day followed by a dreadful day of being confined to bed. My bowel problem and food intolerances are reappearing. My core energy is running down and I am losing the stamina I had gained. I will now begin to monitor blood pressure, temperature and heart rate, (in the way I was taught by Dr Peatfield) to see what that is doing and to provide an objective record of what is happening. It seems a cruel fate to only have been well for 4.5 years of my entire adult life to now be having my refound health taken away. It is awful that so many of us up here are finding ourselves in this position. We will survive, we will find a way to be well.
Written by
Marthathecat
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You could try Oxford Biosciences for powdered Methylcobalamin . They will tell you where to get the saline to reconstitute it. Intravita supply ampoules of Methylcobalamin They cost £33 for 10 x1mg ampoules or £40 for 10x 5mg plus £8.00 for P&P . You e-mail ---nicola@intravita.uk for your requirements. Tel 01621 814301
I really would try Oxford biosciences powdered Methyl . You make it up into 20 mls in a small vial. You could then just draw up 1/2 ml per injection, because I'm sure a lower dose is just as beneficial when you are injecting daily. Best wishes to you . I think 20 mls costs around £35 (. With postage. )
The main (the only??) reason people can't convert hydroxocobalamin to methylcobalamin is a problem with the methylation process. This involves a methyl group being transferred from methyltetrahydrofolate to the cobalamin.
Methyltetrahydrofolate is produced in the body by a cycle involving a few steps. With normal people folic acid can enter this cycle and there's no problem. A very few people have problems efficiently reducing methylenetetrahydrofolate to methyltetrahydrofolate - resulting in inefficient conversion of hydroxocobalamin to methylcobalamin.
Supplementation with oral methyltetrahydrofolate (sold as methylfolate or metafolin) should plug that gap in the cycle - enabling conversion of hydroxocobalamin to methylcobalamin.
Thank you, that does sound very hopeful as hydroxo is easy to come by and cheap. Do you know where is the best place to order methyl folate from and how much should I take? OMG I hope I can convert hydroxo
I sympathise, Marthathecat. I need one x 5000 mcg/ml methyl injection every two days just to be able to see reasonably well. I've now run out and, like you, balk at the price of buying it from Intravita - I'd be spending £48 every 3 weeks. Along with thyroid, adrenal and other meds, looking after my own health really adds up.
I switched to injecting hydroxo instead and taking methylfolate to help convert it. I have 1500 mcg/ml ampoules which I started using a week ago, but I've found that my hands and feet become tingly and even number than they were by late afternoon every day. Today I've started injecting 2 ampoules, 3000 mcg/2 mls, and I've bumped up the folate to around 4800 mcg, divided into two doses. Just waiting now to see if there's any improvement.
I hope the folate works for you.
xx
Edited - should have said I inject hydroxo every day.
It's desperate for so many of us now. I hope the methylfolate works for you too. I have stockpiled hydroxo anticipating the day methyl becomes unavailable so have been frustrated that it doesn't work for me after all the effort.
Have you tried methyl patches? I tried them recently while away from home and I think they made a difference, along with sublingual adenosylcobalamin/folate tablets.
I didn't find the Better You spray effective, I gave it to my son as well and it didn't make much difference to him, but I do see an improvement in him with the adenosylcobalamin.
Thanks for your reply. I haven't tried patches but will try the methylfolate to see if it makes my body able to convert hydroxo into useable form. I hope it works because I stockpiled about a years supply in anticipation of a methyl shortage. Doctors and others involved in treating PA or campaigning to raise awareness have informed me that they have had personal threats from big Pharma for prescribing or supplying Methylcobalamin.
Doctors and others involved in treating PA or campaigning to raise awareness have informed me that they have had personal threats from big Pharma for prescribing or supplying Methylcobalamin.
I don't believe that for a moment. It is a scurrilous lie.
How can I be so certain? Because 'Big Pharma' make zero money from sales of hydroxocobalamin or cyanocobalamin. Both are way, way out of patent and are made by teeny-tiny little companies that have about as much influence as I do.
I think perhaps that if you suffered from hypothyroidism, you would observe Marthathecat's claims in action. It is time-consuming to treat and monitor hypo-T correctly and thoroughly. So, what doctors do instead is prescribe for the consequences of the condition - statins for high cholesterol, anti-depressants and even lithium and anti-psychotics for the mental health issues, ACE inhibitors etc. for the high blood pressure, and on and on it goes. Doctors do have an incentive under the QOF framework to treat symptoms instead of causes. The consequent drug sales are profitable for someone...
exactly my point. Doctors who do dare to treat outside the box and make their patients well are often witch hunted and risk their careers to help us. Three such cases are Dr Peatfield,Dr Myhill and Dr Skinner who sadly died some say from the constant stress of GMC attacks on him.
There is huge money to be made selling a whole mountain of expensive drugs for the dreadful side effects of untreated PA. Get yourself along to some B12d, PA Soc meetings or PA conference and get yourself informed about what is being done to us before publically accusing me of being a 'scurrilous liar'
It's the same with thyroid T3... that's why I think they keep the cost unnecessarily high here and are not allowed to prescribe it. One lady said that after it was discontinued, within a month she was on four different big pharma drugs.
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